“asthma research developments” – a response: there’s really nothing new here.

I was really excited tonight when my friends at the Asthma Society of Canada shared an article entitled Six research developments in asthma via Healio. I think it’s important for patients to know what’s going on in research, and hopefully, the more people see what’s going on, the more people feel the desire to volunteer as participants in asthma research studies (like the Severe Asthma Research Program) or clinical trials that they are eligible to participate in.

The disappointing reality, though, is these “research developments” really contain little new knowledge. Some of these facts have been circulating around for a few years if you’ve been paying attention—and others, well, while I have a larger knowledge base on asthma than the average person with asthma [and, admittedly, some medical professionals], I am not a medical professional or researcher, and . . . I could have concluded the same thing, just less scientifically. Some others, well, point six for example? I knew from the title I wouldn’t understand, so I am admitting defeat on that right now.

Note that while I’ve linked a lot of studies here, I tried to keep my explanations basic [because, that’s the only way I actually understand].

 

1. “Asthma inversely linked to lung cancer.” Allegedly, the more atopic diseases one has, the lower risk that they’ll develop lung cancer—asthma was the least protective compared to eczema [middle-ground] and hay fever [most protective benefit—I actually want to put “benefit” in quotes.] So the finding that perhaps there is a [weak?] correlation between the inflammatory/allergic disease process and cancer is interesting, but, is it something that I can apply to improve my own outcomes? Nope, not really.

2. “E-cigarettes may worsen asthma, respiratory disease among youth. You’re joking, right? Inhaling a nicotine based chemical vapour might cause asthma symptoms? “Among youth” is also the key phrase here—for only the reason that it should be “among people”. I react to chemicals–from perfume or cologne, to body lotions, to Lysol—with exposure, never mind with purposefully inhaling stuff.

3. “Asthma relapse more likely after use of short-acting beta-2 agonists.” A beta-2 agonist is just the fancy term for a bronchodilator [a medicine that widens narrowed airways]; short acting ones [SABAs] are the common rescue inhalers that work within a few minutes and last for 4-6 hours. In more detail, the study reports that if SABAs are used prior to going to the hospital, relapse—or what some hardcore asthmatics would call rebounding—is more likely to occur. I actually need to quote this one out here because it’s so ridiculous:

Children who took short-acting beta-2 agonists within 6 hours before hospital admission and the presence of retractions on physical examinations increased their risk for relapse after the treatment for asthma exacerbations, according to data.

Obviously the best line is “according to data” (which you can find here—the full text, however, costs $30 despite that I am on my university’s database network—so, I, possibly like the authors of this article, won’t be digging any deeper). Given the line about SABA use, clearly this is useless data: if a person has an inhaler accessible, why would they not be using it? That’s what it’s for.
We get a bit smarter when we note the “presence of retractions” (decreased ability of the lungs to move air causes the muscles attached to the ribs—allowing the space around the lungs to become larger or smaller [more here on respiratory mechanics]–start working overtime, pulling inward to compensate for respiratory distress. Like I said, I’m not a scientist… but, I’m pretty sure recovering respiratory distress pretty automatically qualifies you to rebound. That, or tapering from the high dose steroids they suggest as a positive measure in preventing relapses. The final point, providing a written plan, is clearly a good one, and if anything is being done to be useful, probably more psychosocial research should fill the gap for what medicine is having trouble providing.

4. “Antibiotic use in first year of life associated with asthma by age 3.” I was diagnosed with asthma in April 2008. Like any sixteen-year-old, I read Wikipedia. Know what Wikipedia told me six years ago? That I had a higher chance of developing asthma because I was a) given antibiotics early in life, b) born premature, c) born by caesarean section. Wikipedia revealed this to me in 2008. Nope, I wasn’t diagnosed when I was three [or seven] but obviously, this is hardly new. If you’re already tired of my links and didn’t click through, that first abstract above [Droste et al.] is from 2000.

5. “Vitamin D3 treatment did not significantly affect asthma patients with low vitamin D levels.” This one is a newer area of exploration [but certainly not as new as 2014…], and to its credit [in my books, at least], its potentially tangible to patients. Initially, studies suggested that vitamin D might alter immune response to some degree (2007 article here for those smarter than me). While the article cited by Healio bases its notation on a single study, a meta-analysis and systematic review of the literature (Zhang, Gong & Liu, 2014) note that among 10 studies, while asthmatics were more likely to have vitamin D deficiency than control subjects [non-asthmatics], their vitamin D levels didn’t alter their asthma symptoms. Thus, what I take from this, is I can continue to avoid the outdoors as much as I want. [Kidding :).]

6. Hardcore science. The sixth point is far too complicated for me to even begin to discuss, so you smart people who understood that 2007 article up there on vitamin D, can please feel welcome to report back to us about elevated urinary diclorophenol and asthma morbidity. Because, like I said, not a scientist, and that is clearly not applicable to my life.

 

Research is research, and I’m happy it’s being done—but, I am here now. The above findings are not affecting my daily reality, and I’m not sure they’re getting us any closer to doing so.

While a few legitimately new asthma drugs have hit the market recently (primarily biologics like Xolair) I—and most asthma patients—are either using medications developed 30 or 40 years ago, or variations of medications developed in that timespan The medicine every asthmatic should have access to, most commonly known as Ventolin (salbutamol/albuterol in the US), was developed in 1968. Yet, here I am, forty-six years later, still taking this same bronchodilator medication because the alternatives aren’t available, and even if they were, aren’t really proven to be any more effective (Xopenex, to name one, is not available in Canada—levosalbutamol/levalbuterol is alleged to have fewer cardiac side effects, but… at a much higher price, thus, its much more rarely prescribed). Next up as the most-common asthma medicine type? Inhaled steroids—initially developed in, you guessed it, the 1960s.  We’ve had a few more advances in terms of, say, long-acting bronchodilators, but salmeterol (Advair/Seretide/Serevent)—and less dramatically, formoterol (Symbicort/Dulera/Zenhale/Foradil) carry a black box warning of increased risk of asthma related death.  Know what else causes asthma related death? Asthma.

Knowing that my risk of lung cancer is reduced is great, but maybe that’s not so much a “protective effect” but a biased finding as asthmatics [especially lesser-controlled ones] are often asked if we smoke by medical people—thus increasing our chances of smoking cessation intervention if perhaps we do smoke.

It doesn’t change that right now, today, I’ve used four different inhalers to stay feeling decent. Nope, not normal, not magically controlled… but decent. It doesn’t change that I’ve tried most available asthma medications and while the ones I am on now are the best fit for me so far, I still don’t know when that next thing that could be my “wonder drug” could come along—or if it ever will. We still barely know what causes this disease—other than it’s probably a combination of environment and genetics—so how can we even consider having the ability to find an actual cure for this disease? I honestly don’t think we can—and, here’s where my optimism severely drops: I very much doubt we will in my lifetime.

I just hope that next time I see a top six in research developments, that instead of telling me nothing that changes my daily life, that maybe we know what causes this disease and that it’s become preventable. That maybe they’ve developed an accessible system to phenotype asthma (nod to researchers like Dr. Sally Wenzel working on this right now!) and from that, can throw—hopefully new, and not just newly reformulated—medicine at me that will be guaranteed to work.

And even, most simply, that the psychosocial, emotional, and developmental aspects of the disease are addressed and that this knowledge is applied everywhere possible: to promote better patient and community education that’s developmentally and culturally appropriate for every community; to provide better patient-to-patient support—in a way that’s implementable and sustainable; and to ensure people understand their asthma and understand how to self-advocate.

The science is cool, or at least on its way to being cool—the science will eventually be awesome—but even when new ways to manage—or even cure—asthma arise, I know that if I’m still around that I probably won’t be able to trust the process fully if I don’t have a community of people sharing my story, sharing in similar circumstances, alongside me in whatever that undiscovered path might look like to be adjusting alongside me, too.

stanford #medx: from your couch!

Stanford Medicine X is “a medical conference for everyone”.

Everyone includes a lot of patients—including myself, and people like my friends Kim and Carly [and many others!] who also attended #medx in 2012 and will be back this year.

Cherise, Kim, Chris and I in 2012!

More importantly right now… everyone includes YOU—or, anybody who is chilling at home on their couch, or at their kitchen table, or anywhere there is internet, thanks to the Medicine-X Global Access Program! Through the Global Access Program you can join the main stage fun of Medicine X, check out how technology is evolving and changing healthcare, and how that is becoming more and more accessible to both patients and care providers*. Med-X is taking place from September 5th through 7th [with workshops happening before as well].  And, it’s free! [I know right?! Free is my favourite price, too]  If you’ve never attended a conference virtually before, Carly is a master: she has even written an amazing virtual conference attendance how-to guide to help make the most of your experience.

Remember: Medicine-X… is for everyone. Everyone who participates in Medicine X — whether in person or online — is there for similar reasons: We believe our stories can make a difference; we recognize the potential technology has to improve healthcare—to improve patient outcomes; to change the way we think of–and manage–our own stories that involve chronic disease or another circumstance that has caused us to more deeply invest in healthcare; in changing our own outcomes and interactions within our care. And we all believe that we can be part of a bigger story, where the patient truly becomes the centre of care—not the system.

I guarantee Twitter will be on fire, so if you’re watching from home [or work… Not that I’m encouraging that :].], ensure you jump on that before the conference if you’re unfamiliar. [My soon-to-be-roommate, Karen, even tweeted last year in both Spanish and English—clearly she is magic. She’s also a sport psychologist and also has asthma, so we were totally meant to be roommates and I’m beyond excited to meet her.]
And, while I could tell you what I’m excited for on the main stage, we might be here all day: so check out the program here and get stoked yourself!

Curious? Check it out. Register. [Remember, it’s free.]

And if you have questions, ask away below, or on twitter at #medx—we’ll help you out.

 

*Access to technology among providers in the Western world probably varies much on your geography/medical system. Just because it’s available, doesn’t mean that—for example—iPads are popping up in Canadian hospitals. Here in Winnipeg, electronic charting is sometimes either a) a new thing, or b) not even happening yet.  Which is among reasons why having international input and attendance at these conferences is so important: we can’t improve care through technology we don’t have access to—and, beyond financial constraints, knowledge of value in application is the other huge barrier to integrating technology to improve patient care, or improve the lives of all people. Knowing what I know, I shouldn’t have been shocked when my new-ish gynaecologist, Alaa, pulled up my pathology report on his computer at my first appointment. And I should probably stop being so shocked when I find someone I know wearing a Fitbit or using MyFitnessPal. And, for those of you Canadians who are in this boat with me, don’t worry: there are a handful of Canadians in the crowd, and we’ll do our best to get our voices out there, too.

guest post!: i am sam

Sam and I sitting on the floor practicing [my] shot put form.Sam and I met one day in the Accessibility Resource Centre last Winter (because it took until my fifth year of university to identify as a student with a disability, and then make a bunch of friends in the ARC). Not long later, a shot put lesson possibly happened on the floor one afternoon [see picture]. Another day, we went to the gym, where (God knows why) Sam had me chucking a medicine ball at him repeatedly while I did bosu supermans and yes 97% of these throws non-intentionally hit him in the man parts. I’m not even trying to make myself sound nice with the non-intentionality because seriously, I am not good at accuracy. Also one day we explored Toys R Us, then a thrift store, to find a stuffed pig to make him fly.

Like so:

Anyways, there’s my back story [stories?] about Sam.

Now it’s his turn to tell you his own story–many aspects which he and I have parallel views on even if we didn’t know it yet. Thanks, Sam!

———-

I am Sam. Sam I am – without the joys of green eggs and ham.

I was born in 1990 with Myelomeningocele – commonly referred to as Spina Bifida. Medically speaking, it is a defect in my spine that has rendered my legs rather useless, and has left me confined to a wheelchair. However, thanks to my parents and my upbringing, my wheelchair was rather invisible to me until Junior High School when social classes become more important.

While my preamble makes disability sound like a horrible thing, it actually has taught me some important life lessons that simply cannot be taught by another person. These lessons include the power of sport, the importance of community, the strength of advocacy, and patience.

The first lesson is advocacy. This lesson is two-fold; one for knowing how to advocate for your person and the other is to advocate for a better life. While they seem all the same, the later is to advocate for a society that benefits all. Advocacy and patience goes hand in hand because while you know what’s needed to change for full inclusion of all members of society, you consciously know it isn’t going to happen today, or tomorrow, or this year. It’s hard to advocate for change when you can’t see it, but it remains an important feat as change wouldn’t occur without those efforts. The advocacy for one’s person though is a more gratifying form, as results are generally seen and noticeable. While becoming a product of Child and Family Services in my late teen years – I learn this lesson rather quickly. There, a system, which is designed for my protection, was attempting to charge me, a paraplegic from the waist down, with assault for kicking someone. Clearly, I couldn’t let this pass by.

Patience is another thing that I’ve learned, and although a lot of it is learned through advocating for better accessibility, the other aspects in life that have required it is in health and in love. Medically, things don’t always go according to plan – and usually, it is just out of your control. Love is the same way. It takes a special person to accept a disability and to love the individual for who they are. Society is too caught up with the media-influenced attributes and preference isn’t given to the person for who they are. And although this special person comes along, you still need to be patient with them as it takes time for them to learn and to understand – and that time we generally undervalue.

Sport is another huge part as it gives a person with a disability an opportunity to tangibly achieve something that is comparative to their able-bodied counterparts. Athleticism is a measurable attribute, however, the comradery that comes with disabled sport is equally important. Here, there is a community that is entrenched, and willing to support you in many ways. You are now one in the same, and that is incredibly powerful.

We often look at the negatives of disability – the what we can’t do, or the what ifs, or the what it could’ve been. However, looking through a lens of how disability can shape an individual is an intriguing perspective. Here, lessons of love, understanding, caring, comradery, patience, can embody these people. However, the comprehensive understanding of these lessons doesn’t make an individual exceptional – but instead, just simply shows the desire to have a good life. Disabled or not, we embody and share those desires. I share these lessons because disability isn’t just negative – it has become a part of my identity. Without my disability, I am not sure if I would be as humble as I am today, or if I would be as accepting of people who face comparable adversities.

So when you see Sam I Am wheeling down the street, pushing with all his might with groceries in tow – just remember, they are just as heavy sitting down as they are standing up.

———-

Sam is a business administration student about to complete his final year in his degree. Sam can occasionally be found singing and playing the piano in front of downtown Winnipeg establishments while waiting for the bus [except not now because they removed most of them. The pianos, I mean], but more often right now you’ll find him with a tennis racket. Sam is a multi-sport athlete (it’s a long list, but let’s just say he’s working at getting me out for wheelchair tennis, basketball and para-athletics. And I’m sure sledge hockey when the city freezes over again), and is active in promoting wheelchair sport to the community.

You can connect with Sam on Twitter at @samunrau–and, Sam has just started a blog so new that nothing is really on there, so you should probably go Roll Along With Sam–even if a suspenseful ride at present!

book review: a different kind of cheerleader

There are a few things I have opinions on—a lot of the time I just shut up, but sometimes I get argumentative, and sometimes I get argumentative about my opinions with people on Twitter. We are usually quite civil about it, but this is the first time I ended up reviewing a book out of the scenario. I connected with author Lira Brannon last week—connected is a nice term, in retrospect, I did interrogate her a bit about the “inspirational” nature of her book A Different Kind of Cheerleader, and the type of “inspirational”-ism that was implied, as the book is both centred around disability and Christianity. As I said on Twitter, “Disability isn’t inspiration: it’s life”. Lira, however, dealt with my interrogation well, and when I asked if I could receive an electronic copy of the book for free in exchange for a review on my blog, she agreed and quickly hooked me up with a Kindle download code.

Trigger warning: The later aspects of this review mention self-harm and suicide.

Three-sentence summary: 
The main character, Tansy, is a thirteen-year-old with a spinal cord injury [SCI] from a skateboarding accident in her childhood. Now a paraplegic, Tansy has all but abandoned the dream she and her best friend share of successfully qualifying for their junior-high cheerleading squad. As she starts junior high, she is introduced to a variety of new people who change her perceptions about what she believes she is capable of—and what she thinks about God, and who she was created to be, and to become.

Target age:
I’d throw this one in the 10 to 15 age-range—but, I personally enjoy teen fiction, so go with what works for you/the kid you’re trying to buy a book for.

Thoughts:
Overall, while the core aspects of the plot were fairly predictable, there were enough twists in the core of it to keep me interested and guessing—I started reading the book late Thursday evening, kept going until 1:30 AM, and finished it off the next morning [and people, my Concerta would have worn off at 11:30 or so—it was the book keeping me going].

While the core aspects of the book include Tansy’s desire to become a cheerleader independent of her disability, the author paints a very clear picture of the rest of Tansy’s life: starting at a new school and dealing with how her teachers respond to a student using a wheelchair (i.e. the typical ‘I can’t walk, but I can hear’); Tansy’s feelings towards her disability (anger, resentment, and eventually acceptance); responding to how her friends perceive her disability; relationships with her mother, brother, friends, physical therapist; and how her SCI and using a wheelchair pose additional contemplations within the already complicated life of an adolescent trying to figure out her place in the world.

Though I slated the book for younger ages, there are some themes including self-injury, attempted suicide, and suicidal ideation present in the book that may be more suitable for slightly older readers. The mentions of these aspects are brief, however, they were a source of confusion for me as I didn’t think there was enough detail preceding or explaining the circumstances in which Tansy’s acquaintance from rehab, Meg, was hospitalized following a suicide attempt (this may require a re-read on my part). While not comorbid, I appreciated that the author intentionally mentioned the mental health aspects associated with living with a disability and/or following a traumatic injury.

The storyline brings Tansy to interact with a variety of people who become a part of the bigger story unfolding—pressures from different people lead her different directions: some into finding the confidence to try out for cheer, others who cross her path in unexpected ways that help teach her about God—and through these conversations, more about the people around her. While some characters seemed slightly out-of-place [i.e. I don’t care if he’s the coach’s son, why the heck is the youth pastor hanging out in the middle school gym and at cheer tryouts all the time?], for the most part, the interaction of the themes surrounding Tansy’s daily life learning to more fully coexist with her disability, and the journey towards believing in God, was well structured.

I thought, despite all the #inspiration[al] tags, that overall the author did a decent job at not sensationalizing Tansy’s accomplishments, and allowing her to both succeed and screw up as much as a character without a disability would have, with a few exceptions of circumstances that wouldn’t have arisen if not for Tansy’s disability […which obviously is realistic]. In terms of the realism of integrating Tansy into the cheer team, I [being an adapted physical activity nerd] felt that Lira addressed the types of “wheelchair tricks” Tansy was able to learn well, but would have enjoyed reading more about how she became a true team member and not just a possible story of oh you’re in a wheelchair, we’ll let you on the team even though you blah blah blah through more concrete examples of how she used her chair as an asset and not an inspiration–such as how she would be integrated into team and more gymnastic-type and how existing routines were adapted. But, like I said, I’m a nerd that way.

Reading Guide:
A question guide is provided in the back of the book, which prompts the reader [or an educator or youth leader, etc.] to reflect on what they’ve read. The questions are evenly distributed between faith, friends, family, and Tansy’s disability. Though I never use reading guides on my own [because, what is this, school?], it’s definitely a nice bonus feature.

Recommendation:
A Different Kind of Cheerleader is geared towards older-school aged kids and younger-teens—an easily approachable read, with enough plot twists and serious/more mature themes to keep older readers engaged Cheerleader would be a great way to approach the topic of disability in a variety of settings. As both faith and disability are core-topics [and often very confusing], I’d recommend younger kids (under 12) be supported through reading this book, by a parent, mentor or educator, to best facilitate learning and enabling kids to ask questions and form a better understanding of their own thoughts on both core themes.

Final thoughts:
A Different Kind of Cheerleader is an approachable and engaging book for readers in their younger teens [and, if you’re me, early twenties], presenting a variety of opportunities for critical thought on faith and disability. With multiple quick unexpected turns in the plot, Cheerleader is easy to get lost in for a few hours, and would be a suitable way to begin a discussion on teens’ thoughts on what it means to live with a disability—and hopefully, one that can help realistically assist them in contemplating how to restructure their thoughts on a variety of different topics.

A Different Kind of Cheerleader can be found on Amazon. You can learn more about Lira on her website, and through connecting with her on Twitter and Facebook.

Disclosure: I received a free electronic copy of the book, A Different Kind of Cheerleader, from the author, Lira Brannon, which I offered to review prior to finalizing the agreement. I was under no obligation to provide a favourable review.

graduation: the start of a new chapter.

i crossed a line five years in the making
that the biggest eraser can’t clear.

–this is the sweetest little song, butch walker. 

 
 Photo credit to Amber

Five years, and far more stories than I would have ever imagined.
Today, I close this chapter in the story and move on to the next one, with the storyline embedded deep within me.
 
These five years are worth far more than a piece of paper and these pictures. The last five years are the story, the experiences, the process. And this day, this piece of paper may symbolize that I can put the things I know onto papers and into practice, but only to an extent.
The degree, Bachelor of Physical and Health Education, implies much about what I have learned outside of myself: in no way can those six words even begin to indicate what I learned inside myself and what I—and those around me sharing this story–changed inside myself. And that the change inside me is far more crucial to my ability to connect with others than most things I could ever be assessed on.
 
The last five years are not about this moment: they are about the collection moments that lead me here.

connect the dots there is a picture in these lines
my favourite parts of life are in the nights of better sleep i never find.
but even if i don’t decide to chase my dreams, i won’t throw them away
[…] i won’t forget everything i wen through to get here
but i haven’t decided if here is quite where i belong.
—where i belong, farewell fighter
 
 
They are about the process.
 
 
 
The people.
 
 
 
 
 
Photo credit to Becki
 
 
 
The story.
 
 
And what’s ahead.
 
Note: I’ll be updating this post with more pictures/quotes over the next few days… Check back :].

guest post! | kat’s story – neurodiversity: dyspraxia edition

Though I lacked a formal term in my lexicon, the concept of “neurodiversity” (though somewhat controversial) is one that I’ve appreciated since long before my own ADHD/LD diagnosis. Typically, neurodiversity is seen as a concept that seeks to portray a variety of neurologically based “disorders” simply as variations—these include ADHD, autism spectrum disorders and Tourette syndrome, as well as specific learning disabilitiesAnother condition under the umbrella is dyspraxia—one that is probably less generally understood than several others on the list. 

I connected with Katherine (whom I always refer to, in my head and out loud, as Kat) several years ago—we connected initially over asthma, but that’s a rarer discussion topic at this point! More often, we’re planning adventures, spending several hours on Skype telling stories, discussing school, or making mug cake (yes, we made mug cake together on Skype—the level of coaching I required was ridiculous, and Kat’s a good person who didn’t make fun of me—too much :).]

Today, Kat is sharing her perspective as an adult with dyspraxia—a developmental delay affecting motor coordination. Dyspraxia is seldom discussed in the context of adulthood, so I’m excited to have Kat here today!

———-

Hello, my name is Katherine and…

I am a computer programmer.

I am learning American Sign Language.

I am a knitter.

I am a book worm.

I am a condo owner.

I am a Cardinals baseball fan.

I am dyspraxic.

My story of life as a grown up is much the same as any other 25 year old female living in the midwestern United States. I do exciting things like go to work, cook dinner, hang out with friends, and explore diverse and varied interests. However, my brain and I occupy a different motor skills space than yours most likely does. In the early/mid 90′s when I was a preschooler/grade schooler I had motor skill developmental delays. At the time the doctors called it dysfunctional/disordered motor planning, at the time new politically correct version of “clumsy child syndrome” which is now commonly know as dyspraxia. Basically my neurons don’t always connect my muscles to my brain well. Sometimes the message gets through and my body works just fine, other times it gets lost along the way. My writing skills are slow, painful, and took exceedingly long to develop. PE was my least favorite class ever; they always passed me but noted a need for improvement of coordination in activities like running, skipping, and jump rope.

In some ways getting to high school, college, and now the “real world” is easier. I’m no longer graded on my penmanship, and no one expects me to write in cursive. Nor does socialization involve jumping double dutch, although walking in heels is equally perilous. The majority of my work and other written communication is keyed out on a qwerty keyboard of some sort. While learning to type was a challenge initially I’ve taken to keying by touch much better than I ever had to writing. You won’t hear many stories like mine because I’m from the US, seemingly few dyspraxics exist Stateside (UK seems to have cornered the market). Also much more common in males for whatever reason. I’m a grown adult who has found a successful contributory place in society.

The voice of adults with developmental delays is seemingly nonexistent. Not because we aren’t here, and no, we didn’t outgrow it. Turning 18, 21 or any other arbitrary age doesn’t magically catch you up to your peers. Some of it is that we’ve learned how to adapt our lifestyles to avoid skills we haven’t mastered. My cooking has never been dinner party elegant but it tastes just dandy. I’ve found cooking implements that don’t require lots of coordination to work (OXO make some real winners at least for me). I drive a stick shift car of the same brand as i first learned on (so it has the same sized gear box with a clutch that “grabs” similarly). If I’m tired or have a mentally stimulating day ahead of me I don’t drive. Quite simply, while I can drive it takes quite a bit of mental concentration to drive, follow the assigned route and otherwise be attentive to my surroundings. Somedays this is more than I should really take on. I know my limits and live close to a transit loop. My life looks like that of the neurotypical adult because pick surroundings and activities that suit my needs and abilities.

Life is learning and growing and changing the world around you to make it work. Taking it in stride when you trip over your own feet stone cold sober in trainers.

—–

Kat has a degree in computer science and works as a programmer—she is pursuing American Sign Language as a personal interest (but in the very ambitious form of evening university classes—and watching the videos for my Disability Studies class in the Fall). Kat’s “diverse and varied interests” include several different fitness pursuits (running, cycling, swimming . . . ahem, triathlon :] . . .), making me jealous as she goes to Chicago, and crafty stuff like knitting and—though, I think this has culminated—having all sorts of condo do-it-yourself shenanigans.  

Kat can be found on Twitter as @kat314159 […yes. That is pi there. No, not that kind of pie].

twenty two: spinning.

and i scratched these words into a black notebook…

last straw, jack’s mannequin

There are so many unexpected ironies included in those lyrics with what was to come—foreshadowing.
i’m one year older now since the last time I saw you in case you wanna know, i’m about to say what i’m up to.
first of all i’m a sluggard, moving slow in a clumsy way
some peace of mind is what i want, but that will be the day.
i’ve been going without fault for so long, and this must end
running round in circles, i’ve been so far from myself
searching for the energy, and the time to make a change
to make a change in my life, instead of watching it pass by
do something now while i’m alive
 
i’m twenty-two, don’t know what i’m supposed to do
or how to be, to get some more out of me
i’m twenty-two, so far away from all my dreams
i’m twenty-two, twenty-two–feeling blue
 
[…]
afraid that i will be weak forever
i can’t stay in this shape any longer
my life’s just another cliche
 
twenty-two, millencolin
As I did of 2013 when 2014 started, I refuse to recap my twenty-second year: It was important, it changed me, but that change did not occur through circumstances I chose. It was important to me—it still is important to me—to share those stories, to be transparent, for a variety of reasons. Among the most important, though, can be summarized concisely in my friend Jay’s words: “We cannot control our circumstances, only our responses to them”.

i’m keeping quiet until the phone stops ringing  lately it’s hard to disconnect, i just want something real i’ll find my words if i can just stop thinking the room is spinning, i have got no choice be patient, i am getting to the point… 

spinning, jack’s mannequin

I grew, I came out on top with a few more scars inside me.
you watched that poor girl waste the best years of her life and i’ll be damned if i am going out i will not go out that way.
last straw, jack’s mannequin.
I’m alive and determined to make this count.

i can’t remember when the earth turned slowly so i just waited with the lights turned out again i lost my place, but i can’t stop this story 

Tomorrow, I turn twenty-three.
i keep forgetting when the earth turned slowly so i just waited till the lights come on again i lost my place but i can’t stop this story i found my way, but until then i’m only spinning 
spinning, jack’s mannequin.

a year ago today

A year ago today

I surfaced at work after being gone for over a week because I couldn’t move. I’d been getting sicker and sicker for months and I couldn’t keep up anymore.

I went back to school to start Spring term, and right before class got a call from my doctor’s office telling me I needed to go to the ER because my hemoglobin was 54.

Today marks a year since my first blood transfusion of 2013—three units from amazing donors that kept me alive, to be followed by another seven in the next four months.

it’s been a bombs and guns and fire kind of season
oh, i need a reason for all of my bleeding tonight.
i’m going to break it out, i’m going to make a scene if i’m right

Day before I got sent to the ER. Note that there’s basically no colour in my face/lips. [I felt like I had energy, but in reality my body probably had just adjusted to being super depleted of hemoglobin that I was able to sit up again.]

A year ago yesterday.

 

World Asthma Day 2013 [May 7th] 365 days ago today.

About 36 hours later, after three units of blood and a bunch of saline.

(And the friggen Lasix. I still don’t understand this combination of saline and Lasix.)

Yesterday.

let the revival rattle me
and open my eyes
it’s so good.
revival, the rocket summer

And today—365 days later.

World Asthma Day 2014. Wearing the same t-shirt I got my mom to bring to the hospital before heading to work early in the morning.

Donald, Mike, Sam and I gave out over a hundred Asthma Society of Canada resources for World Asthma Day.

…Then went to Wal-Mart with the intention of playing Marco Polo. Because that’s badass, right?

I thought about where I was this time last year today—purposefully at some times, fleetingly at others.

Thankful that it won’t be every year that these two days are the same day so I can reflect on each for its own reason. Thankful for the people who choose to spend their time with me—the people who stick by me.

Simply: thankful I’m still alive.

asthma awareness month: google hangout q&a livestream

May is Asthma Awareness Month–and this coming Tuesday is World Asthma Day.  After spending a couple days together in the SF Bay Area last week, Steve and I got our networks to send out some questions, and did a very unstructured Q&A videocast to hopefully get some light shed on asthma, our thoughts, and hopefully teach some people a few new things about this disease.

short stories: if you make a mistake, press star

I have too much to write that requires a lot of thought, and not enough time to write it all out. I’m rounding up guest bloggers to help me out, but while that solidifies, here’s a new series called Short Stories.

Short Stories will be quick anecdotes from my life in a given moment. No greater purpose, just random moments that may [or may not] be of interest.


If you make a mistake, press star

As I managed to break online prescription refills from Shoppers Drug Mart, I use the automated phone service instead.

(Yes, don’t ask me how I managed to break the online service. And the app. Or why I can get Concerta cheaper at Target.)

I have three medications on my counter needing to be refilled relatively soon: Qvar, Atrovent and Concerta, all neatly labeled with their respective “7 digit Rx number located in the left hand corner of your prescription label”.

I also have a pack of hormone pills with 3 active pills remaining [because I back-to-back those F’ers—since I don’t want to be on them but am for medical reasons, obviously I will use this to my advantage], but no respective label. I “press 1” as I walk to the kitchen to find a receipt with my history to grab the number. Punch it in.

“To request another refill, press 1. To hear when your refill will be ready and confirm your order, press 2.”

Press 1.

“Please enter the 7 digit Rx number located in the left [I DID NOT NEED TO PRESS 1!!!]. If you make a mistake, press star.”

I am pretty sure pressing star will not help me.

Glance down, next on the list– “Zenhale 200/5 – Ref: 1”: Input number.

Press 2.

 

I don’t need the Zenhale for 27 days. But hey, at least when they tell me it’ll take a week to get in despite promising they’d stock it, I won’t have to revert back to my backup stash of Symbicort I have now for this purpose.

It makes sense if you have chronic disease!